new to stage IV

[Arkait]

Hi guys Thank you, I have benefited a lot by your shared experiences.

I was diagnosed with stage

3 breast cancer in 2013, right breast.Had mastectomy, lymph nodes removal, and radiation but declined Letrozol. In 2015 left breast was discovered infected, Had another mastectomy, but

again declined Letrozol. Finally, Jan. 2018, diagnosed with stage four, Lung lining involved,

pleural effusion, diagnosis refined by Pet scan to include center of chest lymph infection. I am just starting Letrozol, finally, day three, and apprehensive about quality of life with side effects.

I am desperately looking for alternative cures, these are some under consideration:

Carnivora (from venus flytrap plant, supposedly given to Ronald Reagan for colon cancer?); Simpson oil - cannabis based CBD & THC; cottage cheese and flaxseed oil;

graviola (plant extract); among others. I like alternative cures idea, because they are

less harsh , less side effects, and since they can't be patented or profitable are unproven whether they work or not, which gives them a mystique and me some space of hope. Any of your ladies know about these possi bilities ?

[Barbteeth]

Hi there

Alternative therapies are less harsh re side effects but that’s probably because they don’t work...letrazole has worked for some ladies on here for many years..even a decade or more

I take it and hate the side effects but will tolerate these if it extends my life for a bit longer..I assume you’re oestrogen positive?

Barb xx

[Arkait in reply to Barbteeth]

Hi Barb, Yes negative Her2, Er positive. newly involved lung and mid chest lymph, now,

diagnosed in 2013 stage III, had surgery and radiation only. Enjoyed five years, but

no longer out of the woods. Thanks for advice. I think alternative cures are like

placebo, cause a lot of hope, and therefore might help in that respect, perhaps.

[Hidden]

Hi Arkait,

I have not heard of these treatments, apart from some women who sometimes use CBD oil to manage their pain. I would suggest you post your question in the "Ask a metastatic expert anything" post that was put up two days ago. Then when the question and answer discussion takes place tomorrow the doctor can weigh in on these options and let you know his thoughts and offer his professional opinion.

Take care,

Sophie x

[Arkait in reply to Hidden]

Hi SophSP, thanks for advice. Very grateful for your company in this journey.

[Hidden in reply to Arkait]

Hi Arkait,

You're welcome! There is so much out there that it can be hard to make a decision on which conventional treatments, complementary therapies or alternative treatments to go for. But I really feel that the doctor I mentioned last night can be of help.

Sophie ❤

[Justme153]

I started taking letrozol on January 6th I don't have any side effects yet. I never had any with arimadex either . I have been lucky I guess but I do think we all should not assume we will have side affects just because someone else did.

[Hidden in reply to Justme153]

Hi,

I agree with you. We do not all get the same side effects, and some of us cope very well during treatment. Even our doctors cannot always predict how well we will do with certain medications. When I first started hormone therapy, my oncologist asked me if I had experienced any hot flushes yet. When I said no, she responded with "You will". As if right on cue, I had a hot flush a few days later, followed by a few night sweats and that was it. This was last June! So oncologists can look at how other patients have responded in the past, but that does not mean we will all conform to that.

Sophie

[Arkait in reply to Justme153]

Dear Justme153, Thank you so much for taking the time to reassure me I might

not have side effects, if I am lucky. Much appreciated

Mary in Maine

[Arkait in reply to Justme153]

Dear Justme 153. Hope I am as lucky as you, re side effects from Letrozol. I have been taking only since Feb 2. Ok thus far.

[Arkait]

Dear girlsptz, Not to be misunderstood I am taking Letrozol, now that I have become Stage IV. But I continue to hope some alternative I might try will help, as well.

[Arkait]

Dear SophSP I truly appreciate taking the time to share with me your good

experience , regarding no huge side effects. Very encouraging for me. thanks,

Mary in Maine

[Hidden in reply to Arkait]

Dear Mary,

You're welcome. I am on Letrozole, Zoladex and Zometa, but not on Ibrance. It seems that Ibrance is offered to some women who are ER+, but it was not offered to me and I am doing well with my current treatment. I think it just depends on each patient. I would talk to your oncologist with any concerns you may have.

Sophie

[SeattleMom]

DEAREST ARKAIT! Please consider the letrozole/ibrance combo. If you are hormone receptive, this is the first line of combat against our situation. My heart goes out to you, just reading your story. I do not trust alternative meds when you are Stage IV. God bless you, sister fighter!! XXOO Linda in Seattle

[Arkait in reply to SeattleMom]

Dear Seattle Am about 2 and a half weeks taking Letrozol for first time.

Hopefully it will stop my pleural effusion... Only side effect thus far is

nausia upon waking, which goes away.I take alternative meds for hope

they might help, but I am realistic enough to know they probably wont.

[SeattleMom in reply to Arkait]

Hello, Arkait! Has there been any discussion of introducing Ibrance? Letrozole is often described as more effective in combination with Ibrance. Many prayers that your pain has diminished! XXOO Linda

[Arkait in reply to SeattleMom]

Hi,, Linda.......Yeah, I didn't want Ibrance, yet. Hoping Letrozol alone might work. Probably stupid of me. I was offered to be part of a study of women over

80 who had never taken Letrozol, and would be started on Letrozol and Ibrance, but the side effects listed for Ibrance was daunting, so I didn't

pursue it. Might regret it. We'll see what Letrozol can do. I also started an

alternative supplement called Carnivora....no idea if that can do anything,

but at least there are no side effects.

Meanewhile, catheter (pleurex) is still very bothersome trying to sleep,

nights. But OK during day, at least (somewhat). Nice to talk with you.

Mary in Maine

[Fighteragain18 in reply to Arkait]

Did you not have it drained

[Arkait]

Dear Seattle Mom, or to anyone with pleural effusion in lung lining. I had a catheter

put in yesterday to drain off the fluid that is accumulating in my lower right lung.

I have cancer on the lung , †here. Does anybody else have this condition (fluid builds

up and makes it hard to breathe, so it has to be drained. )I had a permanent catheter

put in yesterday, but it was excruciatiatingly painful (I was conscious on 50, then 100, then

150 levaquin which didn't work. I had to wait 3 hours and 15 minutes to convince hospital

I needed morphine the pain was so bad (breathing fel† like knife jabs). Even today, 2 days

afterwards I am extremely uncomfortable from it,and cannot lie down freely,except to avoid the area. Has anybody else here had a lung drain catheter inserted, and had this

kind of reaction. The surgeon who inserted it seems surprised at my distress. Said it

was not common. I dont know what to expect, and how well I am going to tolerate it long

term !

[Sunnydaz in reply to Arkait]

Hi Arkait,

My pluerx drain was very uncomfortable in the beginning. I was told they usually are not. It took a while on advil before it became more comfortable. Mine was right under my right breast and on it felt like it was right on my rib. What helped me was how the tube was sitting on my chest. When it was up high on the rib I had so much more pain. When I placed the tube with the cap lower and pointing towards my back. It made a world of difference. This happened a few times until I know exactly where to place the coiled tube. I hope you get some relief soon.

Robin xo

[Arkait in reply to Sunnydaz]

I am a little more comfortable with the pleurex catheter by now, day 8. I was told it will get

more comfortable with time. I still have to take pain meds to sleep, as it still hurts a lot to

lie down and try to get a night's sleep. took 1000 me Tylenol last night. Dont sleep well.

Have to lay on left shoulder blade only. very restrictive. breathing better, at least, due to

draining fluid every other day. So that's to the good... have started on Letrozol, and am hoping

it might stop the fluid building up. Been taking it only 2 and a half weeks. Just a little nausia

upon waking,thus far.

[blms]

I have zero complaints with letrosol. I do take it at night before bed, and I do notice a hot flash within about 30 minutes of taking it but that’s it. I am 69 years old next week so I’ve been in menopause for many many years and I have several degenerative bone issues which are not tremendously uncommon for my age. I think we tend to blame everything on cancer And cancer medications, when some of it has nothing to do with cancer at all or just our bodies, or other issues and our age. When I took letrozole 15 years ago I had flashes to drive me crazy. I’m considering taking in the morning instead of at night but I haven’t done that As yet

[Arkait]

I made a mistake, the anesthesia given me (that didn't work) when they inserted my

pleurex catheter was 150 of Fentanyl ( sp?) , not Levaquin (which is an antibiotic) .

This is day 5 and I am still not able to sleep due to the catheter.

[Arkait]

Dear Girlsptz, I tried calling, but all docs were out today and

it's the weekend and Monday is a holiday, Visiting nurse is

trying to get me set up for assistance, and she is trying to

get me some answers/.perspective on my "discomfort".

I'm awaiting her call back all afternoon. I think my reaction

(screaming, and waiting for morphine for 3 hours, as I

don't think surgeon took me seriously. Said he'd never

had such a reaction from a patient. (Implied I was not

normal or maybe not believable) getting the catheter inserted, and my

continued great discomfort not typical either. I am hoping

for some percentages on how many patients are unable to

sleep, move their right arm, lie on either side in bed,

bend over, cough, without pain? And how long can

the :"healing" process take? (It's been five days, and I am

beginning to wear down from the pain and lack of sleep)

\I take two pain pills Tylenol or aspirin) twice nightly,

to help me sleep.

But if I get up to go to bathroom, it hurts to move and is hard

to adjust position in order to sleep over and over. I want it

out so badly, but I know I should be patient a little longer...

It is hard to sleep on my back left shoulder blade without

moving, and breathe well---and that's the only position

that does not involve the pain---

. I breathe best lying on my right

side, but I can't now, I am OK upright and can do desk work. type,

but I can;t lie down and rest and I cant do anything with my right

arm. I want to sleep so badly... Not a happy camper, so your

"company" very kind. I've hardly been out of pajamas for the week!

Not at all expected, as I have work to do, which compounds my

stress.

[Arkait]

Want to report I am slightly more comfortable with pleurex catheter by now, about 8 days

from initial insertion. I still have to take pain meds nightly in order to sleep (hurts most

lying down) I took 1000 mg of tylenol last night. I hate needing pain medication, every night.

Had help past 6 days from visiting nurses, draining my right lung. Breathing better, but not yet

up to walking (ice everywhere, and very cold out). I had discussion with nurse and she says

catheter should get less uncomfortable with time. At least it doesn't hurt really bad except

when I move in a certain way, or when I try to lie down, so I have moments when I can read

and type, that are relatively pain free. What is most upsetting is what am reading about

lung cancer being incurable. I am still hoping to find a cure ,rather.Mary in Maine

[Arkait]

Dear girlsptz, Very nice of you to follow my struggle. I am 81 and have been blessed with pain free

existence all these years (except for my periods, years ago, now), so I am a baby when it comes to

running into chronic pain. I rarely take an aspirin, until now.

At least I can type and read (sitting up I am not in pain, just always tired, of course) and think during

day, so I should not be complaining much, probably. What galls me is the amount of pain I felt when

the surgeon inserted the catheter, and the 3 hours afterward that he made me wait for relief (morphine).

Also, the lack of preparation, warning, that the catheter might prove difficult to adjust to (to put it mildly).\

A couple of very unpleasant surprises which I don't feel should have been "sprung" on me.

[Fighteragain18]

I’m mbc to right pleural

I’m interested in graviola supplements but need to clear from my oncologist

I’m on Ibrance and letrazole with porstap every 3 months

[Arkait in reply to Fighteragain18]

Hi, I take Graviola liquid (2 T a day as a supplement. taste like a

citrus drink. Have no idea if it helps or not, but it gives me no side effects.

Update on my Pleurx catheter : I am fully adjusted to it by now, finally. No pain.

I am self draining, even. I take out fluid every four days, now, c 300 ml per

four days. About half what it was six months ago..Breathing is much better, these days. I still have a bad mitral heart

valve which makes exact idea of how I'm doing with the lung cancer hard to

measure. But the Pleurx catheter gets a thumbs up, for a solution, thus far,

despite difficult beginning (as described earlier).

[Fighteragain18]

Was it approved by your oncologist I’m based in the uk and wondered if it messed with my current treatment Ibrance n letrazole

[Arkait in reply to Fighteragain18]

I did not consult about supplements I'm taking with my oncologist (he's very

square about such, so probably doesn't know much about supplements I'm fairly sure.